Starting chemo Thursday, May 31 - June Group?

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    Simplyblessed - Don't feel bad.  You have not been feeling well and first and foremost, you have to take care of you.  We are here to support each other when we need it.  When you are feeling better, you will have time to be the support for others.  Right now, you don't have to do that.  I hope your SE decrease soon.

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  • steelersluver
    steelersluver Member Posts: 112
    edited June 2012

    Marcia, I share your sleep issues and it stinks!  I finally gave up and got out of bed about an hour ago!  My mom has a summer camp on a river here in PA, so we usually boat there.  It is a slow river, so kayaking is pretty easy if you take your time. There are a lot of trees there too, so staying out of the sun has been pretty easy the little bit I've been there. I just have to watch the time I actually go out on the water, which is an adjustment.

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    steelersluver - Your mom's camp sounds idylic.  I actually think I slept between 5 and 7, so I guess that was my nap!  When I went kayaking, my son and I were in a 2=person boat.  I kept insisting that I was doing it right and he wasn't, when in fact, I should have listened to him.  Maybe I'll try it again.  I would never do it in ocean, though!

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  • steelersluver
    steelersluver Member Posts: 112
    edited June 2012

    I went back to sleep from 7 to 9 and feel much better even though I wish I'd slept that chunk in the middle.  At least it's not a work day for me today!  My daughter gets home from her mission trip tonight, but I won't get to see her till the next day so they have time to de-germ in her luggage at my mom's house first. 

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited June 2012

    I share with all of yoou with the loss of sleep.  What is causing this?  My PC has tried a couple of meds. but nothing works,  think I will call the onc. nur. on Monday and see what they recommend.  All my life I have required a lot of sleep 8-9 hours, as I am the energ. bunny during the day and just crash!  A couple of times I have taken a eps. salts bath, which really helped, so try that just before bedtime.  I even found some ES with lavender scent, Lav is very relaxing.  I can only sleep 4 hours, even with med.  two nights I took another 1/2 tab, two more hours awke another 1/2 tab. slept 2 hours, always awake at 5 AM when light filters in shades, even put on an eye cover.  Any suggestions how others are coping with this.  I'm very cautious of self meds.   don't want to do a Michael Jackson here.

    Simply blessed..... relax and take it easy, you sound like what happend to me.  It does get better.

    Several of you have fun things thi weekend coming up..... enjoy!!!

    Bless you all, we are going to get through this!!

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  • steelersluver
    steelersluver Member Posts: 112
    edited June 2012

    I'm like you Stephanie: they told me I could take an ativan at night to help with sleep, but I am reluctant to use it for sleep because I don't want to become dependent on something to sleep.  I've been trying to walk every day for some exercise, but I'm not sure how much it is helping. I feel like I can barely stay awake in the afternoon, then come night-time, I can't seem to stay asleep. It must be a common problem with the number of people who have mentioned it.

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  • klwanderson
    klwanderson Member Posts: 5
    edited June 2012

    I have my last chemo on the 6th of July and can not wait! Sometimes I feel like I am crazy because the side effects to me seem odd. I have not felt my left foot in 7 days and now my right it starting. It took 5 treatments for this to set in. Does anyone have any idea why or when it will stop? It has already set into my hands as well.

    As for the hairloss I thought I would loose my mind!! I choose to shave my head rather than wait for it fall out, it was the only thing I felt like I had control over. One of my 3 1/2 year old twins loves the peach fuzz... :)

    It may seem like it takes forever but it goes by faster than you realize!

    I wish everyone the best! This to shall pass.....

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    klwanderson- I don't know what chemo regimen you are on but you probably have neuropathy which is a side effect of the chemo.  You may want to talk to your onco about it.  I know there are supplements to help with it but I'm not sure which ones they are and how much.
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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012

    klwanderson- I just copied this from one of the gals on April/May 2012 chemo hangout which is the thread I'm on.  The contributor is dancetrancer who has just finished her chemo.  Make sure you clear it with your onco before you take any supplements.  Good luck!!!!

    neuropathy supplement options:

    B6 - 100 mg/day (or 50 mg like me if you are sensitive to it)

    acetyl-l-carnitine:  1000 mg 3 x daily (total 3000 mg/day)

    l-glutamine: 10 g (don't buy capsules - instead get it in powder form) stirred into a non-heated drink 3 x day) for total of 30 g/day

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited June 2012

    klwanderson-

    regarding the neuropathy, talk to your onc. ASAP, keep on top of things.  One more side effect to think about,  I am on A/C, haven't heard of neuropathy, thought it was with taxol.....!! 

    After my surgery I had that, I went to my chiropractor for something else, she said my sacrum was out of place (I'd been lying on the sofa a lot, no exercise)  did a minor adjustment, the next day I was fine.  So.....  now, I work on that by laying on the floor bend knees, feet on floor, hands behind one knee up to chest and hold, repeat 10, do other knee.  Also, bring both knees to chest hands clasped behing knees and roll side to side you can feel this on the sacrum, these really help and if I feel it coming again this takes care of it.  Think nerves get pinched.  These are both gentle yoga stretches.  Hope it helps.  Stephanie

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  • radioactivegirl
    radioactivegirl Member Posts: 52
    edited June 2012

    Hi Ladies,

    I wanted to say Hi and introduce myself . . . unfortunate we are all here, but this looks like a good board.  I was on the april/may board for awhile but couldnt connect somehow.

    I am on day 4 of my 3rd round of AC.  My first round was horrible as I caught a cold :-( second round wasnt hat bad but I had bad heartburn on day 4-6 along with a mouth sensitivity to anything acidic.  I havent eaten so many potatoes in my life!!  The doc gave me prevacid to prevent the heartburn, told me to take it on day 1 - I did and had some nausea and more than normal swelling/bloating.  I even had to take a compazine.  Now I am struggling with constipation (sorry, but I know we can talk about anything here)  I was going every morning before, now I havent went in 2 days and it is bothering me.  I read that the prevacid really dries you out and my skin was very  very dry yesterday so I have been drinking water like it is going out of style.  Along with eating high fiber foods.  I stopped the prevacid as I think at this point I would prefer the heartburn to the constipation?

    Nice to "meet" you here and I hope to provide support too, rather than just dump my issues on you . . . but you really Know what is going on.  

    :-) Cyndee 

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited June 2012

    Hi Cyndee!!  Our oldest daughter is a Cyndy, are you really a Cynthia...?  She is.

    Wow, we hvve had the same symptoms, exactly.  I got #2 on Tues, 1 on 6/12.  I got acid reflex, was taking Maalox, onc nur. said take Zantac, and don't wait, get ahead of it from day 1, and onc. said take constantly, although I want to try stopping week 2.  Same with mouth sores, tke care of your mouth, low acid, no crunchy stuff... swish with salt/soda water.

    A former chemo patient warned me about constipation, and dr. said to take dulcolax from day 1.  Former chemo pat.  actually ended up in emergency room twice, it got so bad.  I actually took a dulcolax am and pm the first few days.  There is so mucch here out of our control.... I am going to take charge of the few SE that I can control.

    Sorry for typos, I lay on sofa with laptop!  

    Have any of you been to this site 

     http://lookgoodfeelbetter.org/

    Someone told me about it, I was surprised they even have a bi-monthly one here in our tiny burg.  I heard they had lots of samples of nice cosmetics.... I have drawers full of stuff I have bought, who knows might find something new and get some good tips.  Depends how i feel.    Stephanie

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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Hi everyone,

    I just woke up from a four hour chemo nap. I am on day 3 of my 3rd round of A/c so I can't contribute too much right now.

    However, I want to help about the constipation problem. I recently switched anti nausea drugs from zofran to Emend and I can go to the bathroom again. Not sure if zofran is your problem but hope it is an easy fix.

    I am wiped out, but please know I am thinking of everyone.

    Pam

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2012

    klwanderson, we're glad to see that you're so close to finishing chemo, although with the accompanying side effects! There's more information about neuropathy (causes, treatments, coping solutions and more) at the main Breastcancer.org site. Just click the link to go right there.

    StephanieJM, other members have posted glowing reviews of the Look Good Feel Better program for practical advice specifically for women dealing with BC. One comment from another member "they've really helped lots of women cope with no hair, no eyebrows, no eyelashes etc., as well as being a great source of camaraderie when you're feeling your lowest."

    Another recent thread talks about it too:

    http://community.breastcancer.org/forum/69/topic/783475

    The Mods

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  • radioactivegirl
    radioactivegirl Member Posts: 52
    edited June 2012

    Yes Stephanie, I am really Cynthia but have always been called Cindy. In high school I changed the spelling to Cyndee after trying out all of the various ways to spell it, ha ha.



    I was doing ok with the constipation until this round and really think it is the Pepcid. I'm thinking of getting some dulcolax or other aids. I thought I was doing so well with this se until now - I have been eating high fiber foods with avocado being my favorite - who knew it had so much fiber. But I am getting more cranky and irritable so I need to try other things since I am cranky enough right now without the constipation.

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  • ElleBee
    ElleBee Member Posts: 162
    edited July 2012

    SimplyBlessed: You are most welcome darling. And I am not only caught up in the vanity sometimes....it is almost constant! I have lost 35lbs since Jan 3rd....living right and having a great diet of loads of veggies and lean proteins, eating a mostly raw, alkaline diet rich in "super foods". So I was feeling REALLY good about myself. Self-esteem was through the roof. I was getting compliments from people left and right. My husband was acting like a much younger man once the kids go to bed (thankfully that is still the case). Anyway, I have felt the best I have in YEARS. Healthy, slim, attractive. And then cancer hit. Really?! I have cancer? But I look great. I feel great. Really, mastechtomy is my only option? Hair loss?. This horrid bump in my chest that people stare at when they think I am not looking? Acne? What next? Seriously, what next? 

     Like I have said, if there was ever a moment that I believed that I would not beat this disease, then the vanity stuff would not even enter my brain. But I am so darn confident that I will win this war, that the only thing left to get emotional about is the dramatic change to my appearance.

    One of my younger male pals said to me today: "Hey there hot mom". And I just looked at him with a look of doubt. And he replied "Listen. I know your hair is falling out. But you are hot, and you will be hot when you're bald. I've never paid much attention to your hair anyway."

    Whether this is true or not doesn't matter. It felt great to hear that my hair doesn't define me...it has always been the thing I am most proud of in terms of my appearance. Thick, curly, almost black. I really love my hair. But apparently there are other things that are redeeming about my appearance. 

    And Simplyblessed, you just post as often as you feel up to it. And no thanks are necessary...I think I can speak for all of us when I say that. We all know about good days and bad days. Just don't be surprised if I check up on you if I don't hear from you  often. And take some good antacid meds before your next round...like Zantac the night before. Prevention, girl.

    All my best to you...and BIG HUGS!! 

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  • steve-billiemae
    steve-billiemae Member Posts: 33
    edited July 2012

    Hi ya'll,

    Hello, 

    One thing I can say is that Billiemae has always been a great sleeper...until chemo. First she was so light a sleeper, that if a mouse broke wind acrossed the street she woke up! And now she takes chemo naps like some of youve described, and is quick to fall asleep. But if I wake up in the middle of the night she's up playing FV and simply says, "I can't sleep". Weirdest thing though is that she seems to have mild convulsions and snores when she's  really tierd. Neither of those have ever been a part of her sleep cycles before. It's kinda unusual being able to kiss her on my way out in the morning for work, and her sleep right threw it...I guess it's better that way when she struggles to get back to sleep once woken! I just pray that when we make it passed this that her old sleep habits come back to her.

     One day at a time for now,

      Steve 

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  • radioactivegirl
    radioactivegirl Member Posts: 52
    edited July 2012

    Elliebee - my hubby told me today that he likes me better bald than with my wig . . . maybe we think more about our hair than they do?

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited July 2012

    We are leaving in the AM for our family retreat, I think I mentioned it before, so I won't be on line for a week.  Totally exhausted today, glad we got the trailer ready last week when I had a few good days.  I appreciate you all so much, no one other than another chemo patient has any idea how exhausted we can get.  My family is so sympathetic and understanding but until you hve been there you just don't know.  And really hard for me being Super Mom and Gram.

    Ellebee- think you are having a birthday.. Happy One to you, Marcia were you having a night out this weekend... hope it was fun. 

    Good night, I will be thinking of you and you are always in my prayers.  Love you!!!  Stephanie

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  • ElleBee
    ElleBee Member Posts: 162
    edited July 2012

    Stephanie: Have a wonderful trip, and safe travels to you and your family! I hope chemo doesn't drag you down too much and you can do everything on your trip that you want to. And yes, my birthday is this week. Thanks for remembering! :)

    Steve: right there with Billiemae (and Marcia) on the whole sleep thing. I can fall asleep no problem. It's staying asleep that is the trouble. Between 4-5am is usually when it happens. I wake slightly, then my brain clicks into worry-mode, and I just lie there and think, and think, and think. Which is why I am up now, at 5 am. I had the best sleep on vacation since this whole ordeal began. Not sure if it was just from being super-tired, or maybe I was just  so darned content and happy that my brain could just stop. The doc gave me xanax, but like Marcia, I don't want to rely on something for sleep. I just want to sleep naturally. I hope we go back to normal too. Soon would be great.

    Radioactive Girl: sounds like you have a good guy there! I am sure I am making too much out of this whole hair thing. I doubt men care as much as we think they do. My husband said "I would love to get to a point where my biggest worries are your appearance". I love him so.

    Ok, going to try to sleep (again). See you all later 

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  • steve-billiemae
    steve-billiemae Member Posts: 33
    edited July 2012

    Hi Ya'll,

    Billiemae has been given hydrocoin and a variety of antibiotics. She stopped taking the hydro's because they are habit forming and doesn't want that problem to compound things. Oddly enough the antibiotics she has to take with her meals knock her out rather quickly...still wondering what the changes in her treatment regiment may bring, if they change it at all...time will tell!! I loved Cleavland when I was there, had a blast!!!

     Gotta run,

     Steve

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    Hello all,

    I'd like to interact more but I am on day 3 of infusion 3 of 4 and it is not good.  Certainly not as bad as the first time when I thought I'd just forget about getting any treatment rather than be that sick but still just barely holding on.  Ugh, so sick.  Hope you are all feeling better than me. Oh, and yet not losing all the swelling/water weight that I have been carrying the last 10 days that makes normal movement difficult.

    Fruits and most cooked foods are definitely a no-no.  Thank God for oatmeal, toast, and other carbs. 

    VVH 

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  • pamelahope
    pamelahope Member Posts: 534
    edited July 2012

    Ellebee,

    I love what your husband said. Very nice. This sounds funny but my husband prefers me bald!!! He said I was obsessed with my hair before. Now, I can concentrate on what is really important. You have a beautiful face. You will always have that. My husband is going around telling people he likes me better bald!!! I still have some hair, thank you very much!

    Marcia, I had sleep problems before bc. Chemo is helping because I am so knocked out.

    VVH, I am on day four. I understand.

    Going back to bed. Just checking in.

    Stephanie, have a great trip.

    Pam

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited July 2012
    VVH-Hope you start feeling better very very soon.  I know you are in the crash zone after your Cytoxan/Taxotere round.  You may want to let your onco know if your meds don't get a handle on your side effects ( tummy issues, nausea).   Perhaps a change in meds might help.   Ankle swelling is a side effect but let your onco know. 
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  • ElleBee
    ElleBee Member Posts: 162
    edited July 2012

    VVH and Pam: Sorry you two are having a rotten weekend with se's. Hang in there, girls. You only have one more to go!

    Pam: Awesome support that you are getting from your husband! I love it. I am looking forward to the ease of being bald for sure. I took a shower this morning, and it was coming out in clumps. I have noticeable bald patchiness around my hairline. I think I showered 1/4 of it away today! The volume is much less than a few days ago. Today is one of those days that it feels terribly real.

    Steve: Glad you liked Cleveland. I love it here. Can't imagine living anywhere else!

    Ok, off for a nap before work. I'll check on you all from the BGC tomorrow morning (or sooner if I can't sleep again). XOXO

    ElleBee 

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited July 2012

    Welcome Cyndee  - You will find lots of wonderful women here!

    StephanieJM - I hope you have an aazing time and feel well.  It is so sweet of you to remember that I was going out.  I went out Thursday AND Friday and had a great time both nights.  I feel almost normal today and got lots done.  As I come into my infusion week I am getting bummed, knowing I won't feel this good for a bit.  I really have a lot of nerve complaining, considering how few SE I have.

    VVH - I'm so sorry you are feeling so awful.

    Pam - I hope you're feeling better.  My husband has not seen me without hair yet.  I really thought I would be comfortable walking around the house, but I barely want to look at myself, let alone have anyone else see me.  I'm wondering if I will feel differently when it's all out and not so patchy.  He is being very supportive and respectful and it's working for us.  I have so many scarves and bandanas, I'm actually having some fun coordinating them with each day's clothing!  

    Ellebee - I'm sorry you are going through the hair shedding.  That was very hard for me.  It's definitely easier now.  You are definititely a hot mama!  Thick hair, thin hair, or no hair!   Good luck tomorrow.  I'm wishing you minimal SEs and a very happy birthday!

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  • maa764
    maa764 Member Posts: 55
    edited July 2012

    I go tomorrow for my first check up with onc after first treatment - get my bloodwork and hopefully treatment the next day - I am thinking it is a go.  I feel better since getting ativan - the other nausea meds just did nothing.  He did order a patch which we will talk about tomorrow as well.  I am finally able to eat first 8 + days I barely got anything in me so I was concerned.  I did keep calling and aksing what to do etc - they just said eat like you have the flu which was fine but I could not even eat like I had the flu.  One conversation with a different nurse and they called in ativan - big difference so happy to be on that now.

    I had my head shaved today - had it cut short last week but it was really coming out in chunks - think I lasted pretty long almost 20 days from treatment so I got to try out my wigs and some scarves, some work and others not so much.  I have a chemobeanie and so far that is my favorite it feels good on my skin and looks good too.  Now to find a few other things that are cool and easy to put on. 

    Thank you all for your love and support.

    Michelle

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  • klwanderson
    klwanderson Member Posts: 5
    edited July 2012

    MThanks for the info!

    I have an appointment to see the onc this week due to the water retention I have been taking lasiks everyday for over a week and it worse now than when I started taking it.... It seems the side that they removed lymph nodes is really bad fr head to foot. Am I nuts or can only one side of your body retain water? I had the bilateral mastectomy on February 14th and my arm still hurts!

    This last treatment 2 1/2 weeks ago I still can't catch up on sleep and as tired as I am I am still up at 3am and can't sleep.

    I hope everyone is feeling better!

    Kelly

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  • klwanderson
    klwanderson Member Posts: 5
    edited July 2012

    PS

    Michelle- some people like me bald better... I have a dozen wigs and change them up all the time. eBay was a good way to find good quality with out spending a fortune!

    Where did you find the chemobeanie?

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited July 2012

    https://chemobeanies.com/

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